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My Son is Not His Disease and Neither am I

  • If you are reading this blog post you are most likely impacted by Newborn Screening either personally or professionally.  As a new member of the Consumer Task Force, I am supposed to tell you about myself and what led me to advocacy, but I want to offer you more than a bio.  I want to share some wisdom that took me a full decade of trial and error to learn.  For those reading because you are personally impacted by newborn screening, this gift is for you to carry on your journey if you so choose.  For those who are professionally impacted by screening, this may help you help your patients, constituents, or clients more effectively.  

    This blog post is about my identity but it could just as easily be about yours and your child's identity and what defines each of you.  This post isn't about how important newborn screening is. If you're on this website you already know that and it is rich with those resources.  I know how important it is too, and that's why I'm on this task force.  What you might not know is what it looks like ten years out from getting "really bad news," as the midwife called our son's initial diagnosis.  I can promise you nothing, but I can share my perspective.  If you've received "really bad news," or if you just want to understand better what it is to live a life as the mother of a child with a life-threatening and chronic medical condition, then let me introduce myself.

    Before I was an advocate for critical congenital heart disease (CCHD), before I founded two nonprofit organizations, before I was anyone's mother,  before I learned my unborn child would be born with half a heart, before I was married or even a woman, I was a writer.  I've been writing since I was seven years old. I remember the plays I wrote about sock puppets and Greek mythology that made stern teachers laugh.  I remember the poems and stories that made my classmates cry. Though  modest, I had multiple publication credits in respectable literary journals before I ever had children.  I became a "Heart Mom," but I was born a writer.

    Now I must tell you that I wrote a book.  I'm not going to tell you the name of the book because I'm not trying to sell it to you.  It's important to know that my book was not self-published as a vanity project.  Rather, it was published by a mainstream publisher who thought it had market potential based on both the subject matter and my skill as a writer.  The book is about my son and my family as we went from being a cute young couple expecting our first baby to the parents of two children, the first of whom required twelve heart surgeries before he began kindergarten.  His twelfth surgery to place a stent in his pulmonary artery was literally the Thursday before he started elementary school. When your kid's bled out in post op the week before, his first day of kindergarten is strangely anticlimactic.  

    While  I have done many things to advance CCHD awareness, research, advocacy, I am not "just" a heart mom.  I actually have a master's degree in science and technical writing.  My university has a fancier name for the program, but it's basically researching audiences and writing to their level.  I finished my course work two weeks before my son was diagnosed with his heart defects.  I've been invited to write for the American Academy of Pediatrics Section on Bioethics Newsletter and my publication credits are growing.  I'm working on two more books now.  

    Does that negate or devalue the fact that I am a "Heart Mom?"  Not at all. I love being a heart mom because I get to transform the difficult things that happened in my life to help others,  but I am also and was first a writer.  Now I must confess to an embarrassing ego flaw.  Often, very often, people who've read my book, usually other heart moms or even people I know well, will say to me with a tone of obvious surprise, "You are such an amazing writer!" That compliment is double sided.  It's flattering that they think so, but it's hurtful that people assume that just because I have a dramatic story to tell I might lack the skill to tell it well. I'm not a "movie of the week,"  I just happen to be both  a writer AND a Heart Mom.  

    While I'm always surprised by the surprise of others over the quality of my writing, I'm glad this happened.  It is a stark reminder that I am multifaceted and that while I will fight CCHD to my own dying breath, it is just one of many elements that  shape me. My discomfort about not being identified as a writer is proof that CCHD does not define me.  It is proof that I'm a whole person.

    CCHD does not define my son either.   My writing specialty is metaphor, and the best metaphor I can think of is this.  Just as the Grand Canyon is not the Colorado River, none of us is the disease we battle, whether as a caregiver or as a patient.  A canyon is shaped by time, erosion, heat, fire, rain, wind, floods, and the natural movement of a river.  The river matters, yes, but it is not the whole story.  We are all shaped by all of our experiences.  Some experience simply have more impact on us than others, but we are all deep canyons of passion, love, creativity, and possibility.  We are more than any disease or battle and we still have our humanity, enhanced by the depths of our struggles.

    Just as my son's orthopedic defects affect his gait and make his run stiff and awkward, a canyon bends to the shape of the river as it responds to the shape of the land.  My son lives each day with only half a heart, a heart that currently slows down to 28 beats per minute when he sleeps.  Most of our days are sunny, warm, and full of beauty and promise.  When surgeries loom they are like giant thunder clouds, dark and brooding, warning of floods of emotion and pain.  It takes time to recover physically and mentally from those events, and they reshape the landscape of our lives.  The flood does not define the canyon any more than the wind or the clouds.  

    So I can be a "real" writer, and a strong advocate,  a professional working mother and wife, and not be defined solely by my son's health or his heart defects.  Likewise, my son might be an artist, a musician, or a writer too.  He will never be a football or a construction worker, and that's OK.  While I accept and he is also painfully learning  we  must live everyday in the knowledge that he may not survive to be an adult, we are blessed by each good day and must live it fully being all that we can be in the space and time we are allowed.  

    I advocate to give my son and children like him more good days.  I advocate to give people like you and me more hope and empowerment.  I can be a my whole self and fight for better screening and awareness of diseases that threaten newborns, and so can you. Even when your world seems to have shattered with "really bad news," there is a path back to being a whole person that combines the person you were and the person you will become. 

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